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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. J

    Post TTT: Where do I go from here? Any help out there for orthoHYPER?

    I wish I could help you but I'm still learning. My symptoms also worsen throughout the day, I don't know why but I suspect I would have a similar result if tested early am rather than afternoon. Hopefully others with more knowledge will chime in.
  2. J

    Undiagnosed...frustrated w/ Dr.'s..

    I'm curious to know how many of you have an exasperation of symptoms in warmer weather? Last year my cut off was about 90 but now it's more like 80. Also curious to know if meals/stress aggravate your symptoms? And are your symptoms fairly consistent or do they wax and wane?
  3. J

    Undiagnosed...frustrated w/ Dr.'s..

    Thank you--I will check those out. I'm in over in Marin so we're close!
  4. J

    Undiagnosed...frustrated w/ Dr.'s..

    Wow-that's awesome you found a natural OTC!! Very encouraging! I had my epi and norepinephrine tested recently as part of neuroendocrine workup and either one or both were elevated. they said it was probably stress. Thanks so much for the well wishes and you did not add any confusion. :-) I'm...
  5. J

    Undiagnosed...frustrated w/ Dr.'s..

    I have tried...but they said they would not do gene testing as"it's expensive and would not change the outcome". They have noted hyper-mobility in my chart and one dr. noted "possible eds" but that's as far as I got. None of them seem to much about it. I will try again when I manage to get...
  6. J

    Undiagnosed...frustrated w/ Dr.'s..

    By the way out of curiousity, have you been sick/had symptoms your whole life or was this all a pretty recent change to your overall health? I have had some symptoms my whole life like fatigue and long recovery time from exercise, balance issues. I was a dancer/contortionist in NYC--I remember...
  7. J

    Undiagnosed...frustrated w/ Dr.'s..

    I understand that--that's why that is the only plan I can get...BUT--no many Dr.'s around here accept it as they say the gov keeps cutting payments... So there are many people i know who have it but can't even find a primary care Dr.
  8. J

    Undiagnosed...frustrated w/ Dr.'s..

    Thanks--money is tight as I've missed so much work lately but I may be able to change insurance providers next year. I can only get one of the new health reform plans though due to pre- existing conditions and not many Dr.'s where I live accept it. I've heard the gov keeps cutting their payments...
  9. J

    Undiagnosed...frustrated w/ Dr.'s..

    I don't have a BP cuff but maybe will buy one. Am curious to know if it drops! What do you do to help with your symptoms?
  10. J

    Undiagnosed...frustrated w/ Dr.'s..

  11. J

    Undiagnosed...frustrated w/ Dr.'s..

    Can't really afford it right now,...have lost too much ground/income with work but hopefully in the near future.
  12. J

    Undiagnosed...frustrated w/ Dr.'s..

    Thank you so much. I hope we finally get to the bottom of all this!
  13. J

    Undiagnosed...frustrated w/ Dr.'s..

    Thank you so much. I'm in the San Francisco bay area. Sometimes my heart does race after meals but there is most always an decent increase upon standing. Cooler weather is helpful though. Maybe a move to Montana is in my future!
  14. J

    Undiagnosed...frustrated w/ Dr.'s..

    Thank you all so very much for your responses--makes me feel a TON better just having others that understand!!!! Yes-Kaiser is very difficult to deal with. Have met some great Dr.'s but many seem so limited in their scope and others are downright rude. In 2011, I had a period of about 6 mos of...
  15. J

    Undiagnosed...frustrated w/ Dr.'s..

    Hi all-- I'm still as of yet undiagnosed. Have been entirely frustrated w/ medical professionals as have been told I just have anxiety or that my complaints are "somatic". Problems are getting bigger though and feeling pretty desperate. I have hypermobility, which was unfortunately handed down...